poconnor

poconnor, 5 months ago to random

🎉 Our Advocacy Angels take the spotlight on our 3rd day of #12DaysOfJoy!

Tag an advocate who has inspired you or made a positive impact in the patient community.

Let's celebrate the power of advocacy! 👼 #AdvocacyAngels

soheb, 5 months ago to BBC

I am absolutely loving The Secret Genius of Modern Life on BBC iPlayer! So informative! Love learning about how stuff works!

#bbc #iplayer #bbcIplayer #secretgenius

poconnor, 5 months ago to random

🎉 Day 2 of our #12DaysOfJoy celebrates the incredible professionals, advocates, and supporters who make a difference in the lives of people with PKU and Brain injury every day.

Who are you grateful for in your healthcare journey?

Share your stories with #12DaysOfJoy

poconnor, 5 months ago to random

🎉 Day 1: Cherished Connections.

On this first day of our #12DaysOfJoy, let's shower gratitude on our rockstars

Friends & Family!

Tag those who light up your life, bring joy to your journey, and make every day brighter.

poconnor, 5 months ago to random

Don't forget to turn off work notifications!

Merry Christmas.

poconnor, 5 months ago to animals

Dog. That is all.

#FluffMuppet #DogsOfMastodon #keeshond

poconnor, 5 months ago to random

Check out the 'After Brain Injury: Survivor Stories' series @Routledge

These books give a voice to survivors of #BrainInjury & cater to families, carers, professionals, and the survivors themselves.

https://buff.ly/3v8iiHJ

#LivingWithMildBrainInjury #TBI #ABI #Concussion #MTBI

poconnor, 5 months ago to random

Day One of the #PKUGlobe23 Conference on #ScientificProgress was fascinating. Many thanks to the speakers!

Sadly, missed day two, but looking forward to day three on the patient experience -> https://gener8.eventsair.com/pkuglobe23/
#Sepiapterin #SLC6A19Blockers #CRISPRGeneEditing #mRNATherapy #LivingWithPKU #PKU

soheb, 5 months ago to random

Made myself some stir fry noodles the other day!

It was actually quite nice!

#PKU #ClassicalPKU #LivingWithPKU #Phenylketonuria #Phenylalanine #phenylcetonurie #LowProtein #LowProteinDiet

soheb, 5 months ago to random

I don't know if folks on PKU Talk are aware or even care that Threads are going to integrate with Mastodon.

Earlier this year I made the decision to effectively block integration with Threads. I think later on I "muted" Threads rather than a full on block.

I'm now walking back from all of that, and allowing that integration from Threads, whenever it will happen.

Thread below 🧵👇

poconnor, 5 months ago to random

December at PigPen ☃️ PKU, brain injury, & mental health.

Ideas for festive gifts and food.

And it wouldn't be a festive newsletter without a look back at the year, plus a few plans for 2024.
https://mailchi.mp/9d8f2ac0380d/pigpen-newsletter-pku-brain-injury-and-mental-health-9140584

#LivingWithPKU #LivingWithMildBrainInjury #PKU

image/jpeg

poconnor, 6 months ago to random

What is Large Neutral Amino Acid (LNAA) treatment?

#LNAA is an additional treatment for #PKU which is used in certain European nations.

In my book, "Living with PKU," I discussed LNAA and you'll find an excerpt on my blog:
https://buff.ly/408pMWC

#LivingWithPKU #NSPKU2023 #ESPKU2023 #LowProtein

poconnor, 6 months ago to random

An unexpected trip back to NZ has delayed the PigPen Newsletter this month
(everyone is fine - now!).

The November Newsletter 🍂 covers:
➡️ Emergency travel with PKU
➡️ What is LNAA?
➡️ New talking therapy for depression

Plus autumn baking with a tasty Ginger Slice

https://mailchi.mp/b559d165908d/pigpen-newsletter-pku-brain-injury-and-mental-health-9135032

poconnor, 6 months ago to Dogs

“I demand a seat at the table!”

Lunchtime with #FluffMuppet

#Dogs #DogsOfMastodon #Keeshond #Keeshonden

poconnor, 6 months ago to random

Needed a cake at the weekend, so grabbed a tried & trusted @LowProConnect Victoria Sponge cake recipe - https://www.nutricia.co.uk/patients-carers/recipes/victoria-sponge.html
I added cocoa, and swapped out the cream & jam for Chocolate fudge icing.

Delicious!

#PKU #LivingWithPKU #PKUBaking #LowProtein #Phe #LowPhe

poconnor, 6 months ago to blackfriday

🚨🚨#BlackFriday 25% off 🚨
Mild Brain Injury and Post-Concussion Syndrome
“Incredibly vivid... this book will be of great benefit to professionals, survivors and their families alike.”
#LivingWithMildBrainInjury @Routledgebooks
#TBI #Concussion #ABI
https://pigpen.page/Books/

poconnor, 6 months ago to Dogs

Dog photo time

#FluffMuppet #Dogs

soheb, 6 months ago to random

It’s my birthday today!! 🥳🎉

Very Funny Oops GIF by America's Funniest Home Videos

soheb, 6 months ago to random

Has anyone tried the GMPro powder/drink in comparison to the PKU Sphere? What did you think of it?

#PKU #ClassicPKU #LowProtein #LowProteinDiet #Phenylketonuria #Phenylalanine

poconnor, 6 months ago to random

An unexpected trip back to NZ has delayed the PigPen Newsletter this month (everyone is fine - now!).

The November Newsletter 🍂 covers:
➡️ Emergency travel with PKU
➡️ What is LNAA?
➡️ New talking therapy for depression

Plus autumn baking with a tasty Ginger Slice

https://mailchi.mp/b559d165908d/pigpen-newsletter-pku-brain-injury-and-mental-health-9135032

soheb, 6 months ago to random

Our very own @poconnor has written a new update to her newsletter!

All about the ESPKU including the best panel ever held*, and some details about brain injury. Not only that, but it closes on a final thought which-my word, I really needed that about now, so thank you Pauline!

You can read it here (and maybe subscribe, would you?)

• according to me

https://mailchi.mp/b559d165908d/pigpen-newsletter-pku-brain-injury-and-mental-health-9135032?e=c53e4b7d0f

#PKU #Phenylketonuria #Phenylalnine #newsletter #LowProtein #LowProteinDiet #diet #BrainInjury #StephenHawking